8/12/09

Most of what I remember from when my boys were babies is a blur with flashes of emotion. I hate forgetting even the things that I try so hard to relish. Some of the things I do remember, I should probably forget, but then again, I don't want to forget the things that hold us tight together for the enduring of them.

With Miles I remember one particular day with crystal clarity. We were taking a nap when I woke up to strange gurgling and choking sounds. He was vomiting in his sleep, eyes slowly pulling themselves open, a look of nothing on his face. I sat up and turned him on his side and more and more the gasping and choking came, covering ourselves and the bed in wet. I picked him up and it just kept happening. I walked to the neighbor's, asking if I was being a paranoid mother or oh my, it won't stop what should I do?

This mother of four said call the doctor, this is just not normal. Look, it doesn't stop. Heather, GO!

And then I called and she said go to the hospital right now get in the car and go because she's a nurse and she could hear his not stopping over the phone.

On the way there, Ryan looked both ways and ran red lights while our baby grew listless, throwing up green bile and smiling at me when I rubbed his cheeks awake through my tears.

I wanted to fix him.

I'll always want both of them to come home so I can try to fix them.

We still don't know why it happened, but it did. He was happy, flushed and giggling within hours, cleaned of whatever it was that ailed him. We were relieved and stunned at the same time.

So much of motherhood is an effort to right the wrongs done to them.

I explain and I console and I try to lift. I'm straining against it, this reality of life.

Our reality includes fearing for Asher much of the time. We watch him more closely, more focused on his health. Which doesn't match up with the way that we now focus on Miles, the healthy one. It's not fair.

Today Asher suddenly threw up, standing there next to me with a splat that hit the kitchen floor. For a second I was brought back in time, when he was a baby, and spit up was to me and him as water is to a fish.

But then it hit me. His shunt. I thought oh wait that could mean something other than the flu there could be a malfunction this isn't good I hate it when I don't know what to do maybe it's just the flu...

Oh yeah, I'll watch and I'll wait and I'll do it closely. I'll call Ryan and then we'll watch and if something seems strange we'll just get in the car, we'll just GO and we'll run red lights if we have to...

I want to fix him.

A few days ago, Miles watched a YouTube video of the Coldplay song "Fix You." He watched it twice, glued to the screen, taking in the music and the words. I stood behind him and cried. I thought about how very little energy there is to focus on fixing him these days. It's been that way for a long time. It's not fair. I say don't bump his head, be careful, don't hurt your brother...

It is yet another thing that reminds me of how very small I am, and how very much faith this life takes. There are times when we have nothing left to do but hope and then hope in the face of odds.

I hope Asher has a flu bug.

I hope Miles knows how exceptionally valuable he really is.

Update: Asher seems to be doing fine. He slept well and hasn't gotten sick again. I'm guessing it was just a fluke. Thankfully.

Because of the comments, I wanted to add: I do understand that all mothers go through something similar to this, even if they don't have a child with special needs. Life does ebb and flow and there are adjustments that sometimes take something from one child or another. I do realize that's something kids need to learn. Life isn't fair. At the same time, it's difficult for me to relay the difference between that, the inevitable challenges of life, and having a child with health concerns and how that impacts the family. It's too difficult to even attempt to explain, so today I won't try. I just wanted to say that I do recognize there's no way I can control life and keep it fair for my kids, and I don't actually want to. I just hurt when they hurt, like any other mother.

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What a perfect example of what motherhood IS. Wanting to fix. Wanting to make it all better. Wanting to make the hurt go away. You're worried about Asher's physical hurts. You're worried about Miles' (potential) emotional ones. Oh the love that is in you! I somehow can't conceive of Miles not knowing considering someone like me, so very far away, can see it glowing like a beacon.

Oh God, Heather, I know this. We HAVE had the flu bug here and I walk on egg shells watchin Noah- will he get it bad? Will it cause him to, you know, the unspeakable? Every little illness is like that with him. It could bring it all back. And there are so many things that piles the guilt on with having so many kids, not having the time to fix them all at once, but doing what I can with the moments and energy I have.

I do hope all is well. Hold on to that faith. Don't let it shake you. Easier said than done I know.

My best guess (and I'm a genius, so just take this for a fact) is that neither one of them doubt in the least your love for them. And that's what matters. Different children have different needs, and we moms meet them the best we can, but the common denominator is love, and you've got exactly the amount they need-- both of them.

oh very interesting. this is the conversation we need to have (one of many) next time we can just lie around and feel sorry for ourselves for how pathetic we are.

this same stuff goes through my head and i don't know... i hope mr. beans knows that we value him so dearly and desperately, even if he could be having a febrile seizure in the corner, while we tend to moody teen's stubbed toe.

Heather, I am not sure how to convey this in a proper and precise way, but your writing gives me chills. I tear up at the slightest thing ONLY when I read your words. I get goosebumps as my eyes scan through the sentences you have written out so nicely.

I take awhile to come around to you, but I am never disappointed and love everything you take the time to write.

*hugs* I hope both of the kiddos know what an awesome mother you are. I hope Asher feels better soon and it's nothing serious. And I am sure Miles knows that he is great. *hugs*

This has me in tears, for sure. Isn't it amazing how music touches us all differently? This song meant a lot to me when I was battling a particularly rough bout of depression...it was like a love letter from my husband. Keep the hope girl...keep the hope :)

I wait far too long to catch up on my little sister's life, but I continue to be amazed at your talent in writing and your insight in to life. Hang in there being the fantabulous mom that you are and an amazing woman of God!!!!!

Heather, if Asher has a shunt, I highly recommend that you find a doctor that will teach you how to check if it is working. Standing by and watching, waiting to see if things will get worse, if the child is going to end up in hydrocephalus or is just throwing up from the flu is no way to live. I was fortunate that the neurosurgeon who placed my daughter's shunt at birth showed me how to check it. Later doctors seemed annoyed that I knew how to do this, but it was liberating. I always knew immediately if she had the flu or a shunt malfunction. When she was 8 or 9, I taught her to check her own shunt. Once she called from school and said, "Mom, you had better come now. The shunt has not been working. I checked it two hours ago when I got a bad headache. I am now vomiting, and there is something wrong with the peritoneal end of the shunt." She was ten years old, and she attended regular education where no one would have known that she was in trouble. I got her to the hospital where the doctor confirmed a malfunction and did an immediate shunt revision. More recently, as an adult she was ambulanced with severe neck pain to a local hospital where she was morphined asleep. A friend of hers called and told me that she was in the hospital with neck pain. Although neck pain is not a typical symptom of shunt malfunction, it can be. When I got to the hospital, sure enough she had a shunt malfunction -- and was sound asleep. She could have died. I brought her out of the morphine-induced sleep through sheer will power, got hold of Stanford University, got her transferred there, where she had a shunt revision. Mom, don't stop asking until some doctor is willing to teach you to check the shunt. There are enough things to worry about with children who have shunts; guessing whether or not the shunt is working should not be one of them!

Can I just tell you that I understand your pain, even though it must surely have different reasons and feelings for you? I remember crying more than once when I realized that All the things I used to do for Evie, I never did any more after David was born. She had been the most perfect baby and I treasured her, but once her brother came I realized that I was worrying and thinking about her so much less, and actually losing my temper with her for the first time (and second and third. . .) I felt awful. Anyway, I just wanted to let you know that it's probably not all about Asher's differences. We have to protect and teach the littlest one and sometimes that means either not giving attention to, or getting annoyed by the first.

There's no way Miles doesn't know how crazy you are about him, though and you really would do anything for him. It's just that right now you don't have to do as much for him as you do for his brother. And that's very okay.

That feeling the need to 'fix it' is a better way to describe it than I have- as guilt. We all have this in some form with our kids because there are so many different personalities that we as Moms cater to- even if the kids are BOTH healthy.

Every time one of my twins has an coughing attack I feel a little sick myself inside- it's my fault. If they hadn't been preemies, they wouldn't have the extra lung problems. If I could have only held on to them a little longer...

That's all pointless though. We do the best we can with each child and each day and we go on faith and love that it will be enough.

How scary.... I remember my daughter throwing up endlessly while we were visiting my mom in another city. It was all night, with everything getting soaked. I had no clean clothes and was grabbing things out of my mom's dresser as she slept. And the worry was real... without additional health concerns.

It sounds like you've gotten some good advice and love above. YOU are a good mother. It just flows out of these posts of yours.

I hope you find your answer soon; I'm sure it's the not knowing that is so difficult to take.

Heather! You have done it to me again. I have tears rolling down my face!! I will pray for Asher and Miles too, hope that helps your faith! Sometimes us Mom's have to sit back and leave things in God's hands... it's hard but so true! Hugs my friend!

Oh honey, I know exactly --and I mean exactly-- how you feel. When my daughter was two 1/2, and William was 1, William had a stroke. And all our efforts, all our prayers, all our worries, all our strength, our energy went to fixing him.

Life has these twists and turns and you never know what the next day will bring. Or the next year. Someday maybe Kate (my daughter) will be our focus for one reason or another.

You've inspired me to write about this...your post brings all this to the surface again. Your writing is beautiful, inspiring, and very deeply felt by many of us. Thank you!

Elizabeth,Thank you for your advice. I'll talk with the doctor more about that. I had no idea a person could check a shunt without tools from the doc. definitely something for me to look into.

Lisa, Thank you. I know all moms can relate to this. I felt this way even before we knew about Asher's hydrocephalus. Things ebb and flow. It's hard to explain what's added to that when there are some extra special needs. Especially during times of fear or scans or surgery. Very tricky stuff.

And to all of you, thank you for encouraging me and totally getting what I'm saying. Thank you.

Looking back now, my favorite thing that my parents did is that they treated us all differently. Because we were all different. The love was the same, we knew it, but the attention, the activities, the discipline, the way they reacted to us, all different. We are strong now, and very close.My in-laws made an obsession of equal treatment always. Still do. Their kids are in their late thirties and still notice if one "gets more" than the other and grump about the unfairness.LIfe isn't fair. One of the first ways I earned this is my parents didn't worry about treating us with fairness, they just treated us as we needed.

I totally agree that kids need to learn that life isn't fair and that there's no way to treat them equally, there is an ebb and flow surely. Like I said, it's hard to explain what it taken from a "healthier" child in the midst of everything that goes on with one with special needs. It's simply a reality of their lives, and I hurt for their hurt, I guess that's all I'm saying.

Heather, this post is making my heart ache. I understand. Without going into long winded details I will say that I understand what you are facing. Both of my children have had some ongoing medical issues. They are thriving, but it DOES affect everyday life. I understand....and now I am crying :)

Oh, Mama...I am crying. It has been one of those days. The days when the two year old hits the 8 month old, repeatedly. When she can't do anything for herself. When I went to bed discouraged and woke up irrationally angry at the world.

When I needed to be reminded of why I do this, day in and day out. Why we mop up the puke, pull down the pants so the toddler can pee, fix the lunches, throw away the lunches, sweep the floor, clear the dishes, make the cookies, let the toddler help even though it makes a huge mess to clean up...and why I would never choose any other life, ever.

Loves to you, mama. That's what i love about this blogland - we can find confidence and comraderie just a click away.

Beautiful! Parenting can be so difficult! Hang in there! And no, you do not need to explain to anyone what you mean or how it feels, or anything else. It's your blog and you can say exactly how you feel with no explanation!

Oh how I love you Heather. This parenting gig is so stinking hard isn't it?Your boys are so lucky to have you as a Mom. I'm with Deb. We need to have a weekend where we can just lay around and talk and feel sorry for ourselves eating lots of chocolate (I had to add that!).xoxoxo

So glad to hear that Asher is okay! My stomach tightened up when I read that he had thrown up.

I totally understand about dealing with the feelings of life being unfair for your children.

Ours aren't medical issues but they do deal with learning disabilities. My Jacob has pretty severe dyslexia and it makes our school days pretty difficult at times. We have dealt with a lot of tears and why me questions.

I don't have all the answers to why, but I do know that God made Him just the way He wanted. This is what Jacob and I cling to. God is God and He has great plans for my little guy and it just happens that He included the dyslexia as part of who Jacob is.

I feel this way all of hte time, or have for the last year; becuase of all that has happened with my daughter, so much time and energy has been focused on getting her through that there has been nothing left for my other three. And it sucks, and it hurts.

So easy for people to tell you that you can't control/fix/whatever, but knowing that, at least for ME, is one thing, and feeling it is another. My heart goes out to you.

I love that song so much, and I can only imagine how it feels to not be able to fix your child. All I can certain, for certain, is Asher AND Miles are so lucky to have such a wonderful mother. So lucky.